This month Lydia Wayman, Autistic Speaks, writes about autistic routines and how her mother meets her where she is in her world instead of trying to change her. She’s never felt more loved.
There are a lot of people who are admirably good at following my train of thought (or pretending they do until they are outed when I ask a question and find out they have NO idea what’s going on), but my mom is the best. She knows that when I’m on a rampage about obscure topics, “mmhm” will not suffice when I ask what she thinks because “what do you think?” means exactly that when I ask. But it’s way more important that she knows how much my scripts and patterns matter, too, even when we’ve had the same conversation daily for the last ten years, and yes, we do that. My routines matter to me, too. They are not rituals, not in an OCD sense… I can be very, very precise about them, but they make me happy. Last week, we finally got to pick up my brand new, awesome wheelchair (it has power assist, which means I look outside and see a world for me and not a world that will exhaust me in four minutes). My blood sugar dropped in the middle of it and we all got put on pause in the middle of a big room. I got my fruit snacks out, and my mom offered her hands as my plate. I have never liked Scooby Doo, the show, but I am very particular and highly prefer Scooby fruit snacks, so I dumped them out and started arranging them to get ready to eat them in the way I do. My mom asked how I go about it. We talked for some minutes about the whole algorithm which considers total number, evens and odds, and colors, of course. She wasn’t hurried. She wasn’t asking for amusement, to laugh at my weirdness. She wasn’t suggesting I just eat them already so that we could keep going with the day. She was meeting me where I was, as that kind of conversation was much more accessible to me in that big room with bright lights and a low blood sugar. She was asking about my world. Routines are happy things. And I don’t know if I’ve ever felt more loved.
I hear from a lot of parents who try hard to engage their autistic kids, and they say that “he’s in his own world and it’s impossible to reach him.” And then the kid comes over and starts a script and the parent rather impatiently says “please, NOT again, NOT right now!” Or the kid runs over with a train and drives it up and down his mom’s leg. He puts it in her hand and pats it twice. Maybe the mom holds it till he goes somewhere else and immediately puts it down, or maybe she impatiently and rather firmly puts it on the coffee table while he’s still standing right there…”can’t he EVER learn about personal space and will he EVER learn to play with ANY other toy or, you know, connect with an actual PERSON, for once?”
He… just did. He gave it to you. He shared it, the most important object he owns, putting it into your hand and letting it go so that you had the power to do anything you wanted to do with it. So what did you do? You slammed it down. You didn’t want it.
You might try very hard to engage him all day, and I’m sure you do. But I see these kids work every bit as hard to reach out to other people, and when adults don’t recognize their attempts as anything meaningful, they make their frustration very clear, and that kid gets one confusing message. If you sent flowers, or drove all day long to surprise a friend, or gave the object you loved most to another person, and they called you to yell at you for picking allergy-inducers, told you how rude you were to show up so late at night unannounced, and forcefully rid themselves of that object on the nearest tabletop, what would you think? Would you think, “He doesn’t love me…” or would you think that perhaps all your attempts were received in ways other than how you intended them? That second message is not one anyone comes to easily, and I think many adults would take a long while to get there. So, think about a five-year-old and how out of reach that idea would be, that it isn’t his loved that’s unwanted, just the way he’s showing it. Now think of an autistic five-year-old who has had far fewer chances to relate and work out how those strange adults think, who processes and interprets everything, EVERYTHING, in a different way…
When he gave you total control over the thing that brings him comfort, security, and some of his happiest memories… and you made it very clear you didn’t want it and found it a cause for getting angry.
If you ask me, the problem is very much a two-way street, and I’m quite sure that it’s not any five-year-old’s job to figure that out.
Does my mom really care about my fruit snack algorithm? I don’t know. I know that she cares enough to get the RIGHT Scooby boxes from her grocery store because the one I go to doesn’t have them. I know that our kitties have FaceTimed, that she knew that Elsie was better off as “fine” than “good” when I asked every single day, and I know that Tia is still fluffy, every single day, and that she tells me so, even though Tia is a Persian and will never be anything but fluffy. (She is really, really wonderfully, amazingly fluffy!) It took us a lot of years to find our rhythm, and there were some heartbreaking times in those years with some mixed-up messages. And now, I know above all that she loves me, and that any time something ever possibly could point else-wise, that I’m misunderstanding that message. But there isn’t a gift or service (and my mom endlessly helps us) that makes me feel loved in my core like the lifetime of happy moments and the utmost comfort and the purest connection I feel with my kitties… and handing all of that to my mom to keep safe for me by way of our scripts.
You only think it doesn’t make sense. Please, please… take for granted that it DOES and that you may not yet know why. And maybe you never will, because until two sentences ago, I never put it to words, either, and I am sure that my mom as yet has no idea why. She will tomorrow when this is in her inbox, though. Until you know why, and even if you never know in words… then it’s all the more important to be ready and willing to do some careful safekeeping of the ways we are able to tell you.